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1,700 | 17 | QUESTION:
You've explained in your statement that Nick was so
fearful he didn't want to use the products and so h e'd
avoid injecting himself as much as he could and eve n
though that was having -- causing damage to his
joints.
ANSWER:
Yes, I think that by that time he was living with his
partner, yes, and I'm sure -- all of that and more is
true.
|
1,701 | 17 | QUESTION:
There's a document that Nick wrote at the time in
2001, Nick's perspective on being refused recombina nt,
and I'm going to put that up on screen. Again, it' s
one of the documents you have exhibited to your
statement.
It is 282040 please, Paul.
I think you are happy that with this particular
document that you've seen I will read Nick's words?
ANSWER:
Please.
|
1,702 | 17 | QUESTION:
"I will start" -- so it starts, Nick's perspectiv e on
being refused recombinant and what this means for h im,
how does he view plasma derived Factor VIII product s,
and he was writing this in September 2001:
"I will start with my personal experience of
being aware that the treatment I receive is somethi ng
7
to be equally fearful of as the disease. When I wa s
13 I was made aware of what had gone on in the earl y
'80s regarding the HIV infection of a generation of
haemophiliacs. Through what I could only call
educated luck I managed not to be affected. Howeve r,
on being mildly taunted about my haemophilia on day at
school I broke down crying. It was a realisation o f
how vulnerable I was. Until then I had a disease t hat
the outside world gave me sympathy for but I could
handle it myself now. I was seeing why adults gave me
respect and sympathy. Not long after I was diagnos ed
with hepatitis C, well, I was kind of sort of told
something was up. Clarity is not rife in the Healt h
Service. At the time I felt grateful it could have
been worse but now that I'm older my opinion is tha t
every profession is a business even the ones that c ome
at you differently, just as financial decisions mad e
in the '80s by governments of the world killed many ,
many people, what has changed."
Then Nick talks about being told about vCJD,
Della, and he says this:
"A couple of years ago I was pulled into an
office in my hospital as I was on my way to just pi ck
up my supplies and told that one blood donor had
contributed to a batch along with hundreds of other8
donors that I had used. This donor had subsequentl y
died of CJD. To all intents and purposes, end of
story, good day. At that moment I felt like histor y
was repeating itself. Later I was reliably informe d
that this bombshell was nothing more than the healt h
service legally covering its own arse due to what h ad
and was happening to them from the fallout of the H IV
scandal. So where does this leave me? I'm treated
with blood, a risky thing at the best of times. I' m
surrounded by doctors who have the weight of the wo rld
on them, only a fraction of which is concern for my
health, the health authority that wants a fresh sta rt
with all kids born after 1985, a Government that ha s
infinite pillars and posts. I want this treatment.
It is owed to me. It won't give me back a life of
ignorant bliss but it will give me a chance at it."
That was what Nick wrote in 2001. Would you
like us to take a break, Della?
ANSWER:
No, it's okay.
|
1,703 | 17 | QUESTION:
Are you sure? Okay.
The following year Nick started on a second
course of treatment so we're talking now, Della, ab out
2002 and it was PEGylated interferon and ribavirin.
Can you recall anything about how that second
course in 2002 -- 9
ANSWER:
Was that at the Free or had he left the Free?
|
1,704 | 17 | QUESTION:
After three months he'd cleared the virus it seem ed
but then he was tested again and, in fact, the viru s
had returned or he hadn't cleared it?
ANSWER:
Right.0
|
1,705 | 17 | QUESTION:
That you have said in your statement had quite
a devastating impact upon Nick's mental well-being.
ANSWER:
Yes, yes, because we were so hopeful and ... yeah .
|
1,706 | 17 | QUESTION:
So there came a point in 2009 when Nick's care
transferred to the Royal London Hospital and he was
under the care of Professor Foster.
ANSWER:
Right.
|
1,707 | 17 | QUESTION:
So can you recall, first of all, just generally b y
about 2009 can you recall how Nick was physically o r
mentally?
ANSWER:
Well, I recall very clearly he wasn't going to go back
to the Free. He was so frightened, he was so
exhausted by everything that had gone on there and
I had heard Professor Foster speak at a lecture and he
seemed to have slightly different take, a slightly
different view, and I think I went up and chatted t o
him afterwards and Nick wouldn't go back to the Fre e.
He just couldn't. He was ... yeah.
So Dan and I and Nick went to see, at the time
he was working at Queen Mary's, we went to see
Professor Foster and what I do remember of that fir st
meeting is he was extremely kind and attentive to w hat
Nick had to say, which often didn't happen, and he
really felt to take it all in and to say, "I think we
can do something here". I think at that point ther e
1
was yet another possible trial of something or othe r
and he said, "I don't think that's good, we've got to
get Nick strong", or something like -- and Nick cam e
away and he said, "Yes, I think -- you know, I'm no t
going back to the Free and I would like to transfer to
his care", so I mean, he was an adult by then so,
obviously, we asked for him to do so and he
transferred his care to Graham Foster at the Royal
London.
But just prior to him doing that, he had had
a fibroscan at the Free and that -- I'm saying that
now because that figures later on.
|
1,708 | 17 | QUESTION:
So Nick was looked after, came under the care of the
Royal London Hospital from about the autumn of 2009
and there came a point, I don't think we've got the
precise date but perhaps some time in 2011, when Ni ck
was put on another trial of treatment for HCV.
I think this was, by this time, it was a triple
therapy, interferon, ribavirin and telaprevir.
ANSWER:
Okay, so over the earlier period Professor Foster
had -- there's what we always thought was a state o f
the art scan you could have called, a fibroscan, wh ich
told you the state of the liver and, as I say, this is
relevant, if I may --
|
1,709 | 17 | QUESTION:
Yes, of course.2
ANSWER:
-- that just before Nick left the Free he had one and
it wasn't good. I mean, he didn't have cirrhosis b ut
it wasn't good really as what we understood from
Professor Foster or I can't even remember which of
them.
Okay, so when we went to him, he was very
reassuring and very positive and we all liked him a nd
we all had a lot of confidence in him and he said t hat
there weren't any new treatments at that moment but
they would be -- generally he would be looking afte r
his health and doing his best and he wouldn't let N ick
start a treatment that he didn't absolutely feel wo uld
be the answer, so I think at that point that's wher e
we were with him.
|
1,710 | 17 | QUESTION:
One of the concerns you have, however, about the
treatment that Nick received during this period was
that Professor Foster did not undertake or arrange for
any further fibroscans; is that right?
ANSWER:
No, he absolutely did not believe in them. He di dn't
believe in them. I had written to my friend in
America, the same one who had alerted me, and she h ad
a lot of sort of people she knew and influence ther e
and she said that there was a professor there who s he
knew who had worked with Professor Foster and thoug ht
it would be a good place for Nick. So, you know, a t 3
that time -- but this thing of not believing in
fibroscans and not giving Nick fibroscans came to b e
very important, although at that time that wasn't w hat
we were thinking about and he wouldn't -- he didn't
want Nick to go on any unnecessary trials, et ceter a,
et cetera.
|
1,711 | 17 | QUESTION:
But a point came when Nick did start this third
treatment regime.
ANSWER:
Yes, okay. Right.
|
1,712 | 17 | QUESTION:
What can you recall about the effects of that?
ANSWER:
It was unbelievably terrible. It had been -- I w ant
to make a point: this may have been a trial but it had
been approved by NICE before Nicholas started on it .
That's what -- well, everybody knows what they did,
which was reassuring.
It was beyond terrible. I mean, he was so ill.
He developed these most terrible sores all over his
legs which his partner looked after. He was so
frightened. They would send him up to the --
Professor Foster would send him up to the dermatolo gy
department. He was in pain, he was sick, and we wo uld
sit with him for hours until they would see him.
On one occasion a doctor was looking at these
sores and she said, "I think I'll take a biopsy", a nd
she went to get the knife and I said, "You can't gi ve 4
him a biopsy. He's a haemophiliac." She looked at
his notes and she says, "It doesn't say he's
a haemophiliac here". I mean, it was unbelievably
terrible.
|
1,713 | 17 | QUESTION:
Just in relation to the sores and lesions on Nick 's
body and legs, you've shared some photographs of th at
with the Inquiry but we are not going to share
those --
ANSWER:
No, don't, please.
|
1,714 | 17 | QUESTION:
-- or put them up because you don't want those to be
seen.
ANSWER:
No.
|
1,715 | 17 | QUESTION:
But you wanted the Inquiry to see them.
ANSWER:
Yes, we did.
|
1,716 | 17 | QUESTION:
Throughout this period when Nick was on this trea tment
and in very considerable pain, discomfort, the sore s
you have described, is it right, you then pressed
Professor Foster to undertake a fibroscan; is that
your recollection?
ANSWER:
I pressed him, we both pressed him. I said, "Wha t
about a transplant". I said, "I'll give half my
liver", or something. "No, no, no", he said, "He's
nowhere near that point yet".
|
1,717 | 17 | QUESTION:
But he'd also -- you said in your statement you
thought that Professor Foster had made a comment at
5
a conference about Nick's condition.
ANSWER:
Oh, yes, yes.
|
1,718 | 17 | QUESTION:
What was that?
ANSWER:
He'd gone away to Japan or somewhere out there to
a big liver conference and when he came back the ne xt
time we saw him, he said to us blithely, "Oh, yes
I talked about Nicholas. I said he was having the
worst reaction of anybody I had ever seen on this
treatment", like he was a specimen and Nicholas
started to get, I felt, really frightened, scared. We
both felt it.
|
1,719 | 17 | QUESTION:
There's an email that Nick wrote at the time that
Dan's looked at, you don't want to look at, but you
want me to say a little bit about, I think, just so
that Nick's perspective is heard.
I don't need to, Della, if you would like me not
to?
ANSWER:
No, no, if it helps, if it shows.
|
1,720 | 17 | QUESTION:
Of course you can, Della. This is your evidence.
ANSWER:
Very sadly, three weeks, four weeks before then, my
best friend in America died. Dan and I flew out th ere
to go to the memorial.
When we came back, Nick had worsened and but he
would come up to our flat, he and his partner lived
near us, and he would come round and he would lay o n
our settee. We live high up with a wonderful view and
the sun would shine in and he would lay there and w e
would talk for hours.
Then one day we got this call from his partner
to say Nick was really bad. We rushed round there.
By this time they had had a baby ten months before
and, luckily, Olga's parents were over from Ireland 7
and were staying. For three bloody hours we tried to
get an ambulance to take Nick from the house to the
Royal London. They said everything under the world
and in the end we paid for a terrible private
ambulance to take him. Dan went in the ambulance.
Olga, the baby, me, and the parents followed.
We got there. They put him in the special care
unit downstairs for very sick people.
Professor Foster's locum was flapping around and
ringing him and saying this, that and the other. T hey
gave him morphine for the pain and they said to us,
"You go and have a cup of coffee. We're getting hi m
ready. We're taking him up into intensive care. H ave
a cup of coffee. He'll be up there ready by the ti me
you've had your coffee".
We were probably not more than 15 or 20 minutes
and we all went up there. They'd locked us out of
intensive care. They locked us out. Meanwhile my
sister, who's an MP, had got permission to leave
Parliament and come. We slept on the bloody floor
outside the doors of intensive care that night and in
the morning this complete shit of a nurse comes out
and says to me, "Nicholas was so distressed last ni ght
that we've had to sedate him".
I said, "How could you bloody well sedate him 8
when his parents and everyone he loved is laying on
the floor outside". We never saw him alive again. We
never saw him. We couldn't comfort him. We couldn 't
talk -- that evil shit. I reported him and they se nt
someone over. Nothing was ever done. The ambulanc e
never apologised. I mean, it was so terrible and o nly
when Lynne turned up, my sister, they let us -- the y
found us a room because she was an MP and they were
more concerned, they found us a room inside so we
could at least comfortably all night.
And I know this same sadistic bastard was
really, really cruel to Olga as well. I'm telling
you ... just one long, long history of deceit and
unkindness. What for? For money. That's what it was
all about. Like I said, in my earlier speech, it w as
only about money in the end. Sorry.
|
1,721 | 17 | QUESTION:
Della, there's no need to apologise. This is you r
evidence and your opportunity to say what you need to.
ANSWER:
That's it.
|
1,722 | 17 | QUESTION:
Nick died on 18 March 2012. He died of multiple organ
failure. He had sepsis associated with his
hepatitis C and he was 35 years old.
You have put it this way in your statement,
Della:
"Nick died on 18 March and the medical system
9
had screwed us from beginning to the end."
That's the point you wanted to make your
statement.
Della, I've only a few more questions.
ANSWER:
Yes, sure.
|
1,723 | 17 | QUESTION:
We can take a break, if you would like?
ANSWER:
No, no, go ahead.
|
1,724 | 17 | QUESTION:
One of the concerns you have had was about the
combination of drugs and the one particular drug, t he
telaprevir?
ANSWER:
Of course, yes.
|
1,725 | 17 | QUESTION:
And after Nick's death you did some brief researc h of
your own and what did you understand from what you
found?
ANSWER:
Okay, I only heard yesterday that Nick's twin als o did
some brief research and I mean, I didn't, I wasn't on
the net for more than five minutes when I found the re
had been all sorts of deaths from this trial of 0
telaprevir and NICE had approved it.
What were they thinking? It had happened before
it approved, all over the world. So what was that
about? You know, we have to wait for NICE, we have to
wait for NICE. It didn't take me five minutes and it
didn't take [redacted] five minutes to find all these
examples. So I just ... well, I just wanted to kil l
him really but it was done, you know. It was done.
They lied, they cheated him, hundreds of others
and now his daughter doesn't have a Dad, we don't h ave
a son, Olga doesn't have a partner. He was -- well ,
I've got to read you something in a minute. Yeah, we
were lied and, ugh, it was disgusting. I mean what
was the point of taking an oath as a doctor to prot ect
and -- the Hippocratic oath? Just a load of bullsh it.
And they were cruel to us, cruel, anyway.
|
1,726 | 17 | QUESTION:
One last topic, Della, which is just -- and a bri ef
one because you have addressed it in your statement
but I think there was a little more you wanted to a dd.
You made contact with the Skipton and Caxton funds
after Nick's death on Olga's behalf and you have
described in your statement some of the dealings yo u
had, but one of the particular concerns you have ha d
was what you were asking for for Nick's partner and
daughter was being regarded as charity; is that rig ht? 1
ANSWER:
Yes, that's what they said. They said, "Oh you w ant
charity", and I said, "What? Are you crazy?" I sa id,
"How dare you say that to me".
Listen, Dan and I ran a successful business for
many years. I have never encountered -- organised
several of the Skipton and the other one, whatever
they were called, they were just terrible. They
didn't know what they could do. They didn't -- the ir
website was appalling. I wrote numerous letters
showing how it could be organised better. They
described it as charity. They were staffed by reti red
members of the National Health Service who 'd probab ly
been cognisant of what was going on anyway. They w ere
I think over a number of years they got themselves
together a bit but if I can add to this, when it al l
transferred to the so-called national health busine ss
unit, which now exists -- may I add something that' s
not in my statement?
|
1,727 | 17 | QUESTION:
Yes, of course.
ANSWER:
For many, many years after Nick died, I went toge ther
with my friend, Lynn Kelly, who is head of Haemophi lia
Wales. I met Lynn at a meeting of the Department o f
Health. We're both on a committee. They had asked
her to give an exposition on fibroscan which the We lsh
people, the haemophiliacs, had managed to buy but t hey 2
didn't have enough money for a technician to work i t,
and they had asked Lynn to come and give a talk on
that subject.
It was so clear, so precise, so short and the
minute she stopped, the woman who in the Department of
Health was chairing the meeting -- somebody
I personally hold to blame for some of this
disaster -- didn't thank her, didn't say anything, and
all the haemophilia heads from all the units who we re
there just started arguing about funding. And
I thought to myself, "Fuck this, who wants to be on
here", and I resigned.
But I found out who Lynn was and Lynn and I have
become really good friends still and she's done
fantastic work my sister, Lynne Featherstone, who i s
unwell today and not here and who is now in the Hou se
of Lords and has done brilliant work to further thi s
and ... it's just, yes, it's just unbelievable.
That's it.
|
1,728 | 17 | QUESTION:
Della.
ANSWER:
I'm done.
|
1,729 | 17 | QUESTION:
It's all right. So am I. I've been asking you a bout
Nick's illness and treatment but you wanted to say
something about Nick himself.
ANSWER:
I do, I do. Hang on, guys. This is really impor tant
3
for Dan and I and [redacted] , his twin, and Olga his
partner.
Nick and his twin brother [redacted] showed an
early interest in music. They wrote their first so ng
entitled hearts on fire at the age of 8. God knows
what that was about, and when he was 12 he had his
first guitar lesson. Arrogant little sod that he w as
the following week he booked a recording studio.
He handled his haemophilia well despite the
periodic body blows he received courtesy of the poi son
pumped into his veins as a child hep c, close brush es
with HIV and CJD exposure.
He was good at sports but truth to tell not so
good at sportsmanship. He liked to win too much an d
yes, he did go on to become a fine blues and rock
guitarist gigging all round the UK, Europe and
America. He and his brother simultaneously ran
a rehearsal and recording studio at the Chocolate
Factory in Wood Green.
Nick and his partner had a baby girl in 2011 and
when she was a couple of months old he started taki ng
her out to the various venues in which he played,
plopping her down on the bar and introducing her to
one and all as the fruit of his loins. The followi ng
year, just shy of his 36th birthday, hep c finally did 4
for him. He was funny, irreverent, talented, lovin g,
maddening and wonderful son, brother, partner and
father too, if only for ten months. We miss the he ll
out of him.
|
1,730 | 17 | QUESTION:
Della, you know that in relation to some of the p oints
made in your statement that responses have been
obtained by some of the doctors involved?
ANSWER:
I do.
|
1,731 | 17 | QUESTION:
You have been able to look at some of them but no t all
of them and I think you know they will in due cours e
be published by the Inquiry but so too will any
response you want to make once you have been able t o
bring yourself to look at them.
ANSWER:
Okay.
|
1,732 | 18 | QUESTION:
Andy, there's a copy of your witness statement on the
desk if you need to refer to it, but I'm not going to
ask you to look at it but it's there if you need it as
a prompt.
ANSWER:
Thank you.
|
1,733 | 18 | QUESTION:
You were diagnosed with severe haemophilia A in e arly
1978 when you were a baby.
ANSWER:
That's right, yes.
|
1,734 | 18 | QUESTION:
And you were under the care for many years after that
of Dr Hill at the Birmingham Children's Hospital.
ANSWER:
Correct.
|
1,735 | 18 | QUESTION:
And I understand from the documents you have prov ided
to us that you were initially treated with
cryoprecipitate but then you were regularly treated
with Factor VIII products?
ANSWER:
Yes, correct, initially Bio Products Laboratory s tock
but then later on American Armour products.
|
1,736 | 18 | QUESTION:
Do you know if your parents were ever given any
information or advice or warnings about any risk of
infection associated with the use of those products ?
ANSWER:
Not from official sources, no -- not from any of the
staff or doctors at the hospital.
|
1,737 | 18 | QUESTION:
You were taught to self-administer the products a t an
astonishingly young age. Can you tell us about tha t.
ANSWER:
Yes. It used to take five or six people to hold me
down to have my injections. I would kick and screa m
that much I don't think anybody likes having a shar p
metal rod poked into their skin, especially when
they're a toddler, and one day they were having
a particularly difficult time in getting a vein and so
I said, "Well, I'll have a go", and I took the need le
from them and I think they thought it was just a go od
way of persuading me to engage with the process and
maybe let somebody do it a bit later on but
immediately I got a vein and everybody was very
astonished. I was three years and ten months at th at
time.
|
1,738 | 18 | QUESTION:
Is it right you largely self-administered after t hat?
ANSWER:
Yes. Yeah, I mean, I tried to self-administer as much
as I could. If, for example, I couldn't, for examp le,
if I got a bleed in one of my arms or I had a nose
bleed that needed to be pinched or some other reaso n
then my Mum would do it but if I could, I would, ye s.
|
1,739 | 18 | QUESTION:
Now, you have explained in your statement that yo u
were tested or your bloods were tested for hepatiti s B
on numerous occasions from 1979 onwards and there w as
a positive finding in relation to hepatitis B in 19 81.
ANSWER:
That's what my notes show, yes.
|
1,740 | 18 | QUESTION:
You have also referred to there being a whole ran ge of
tests undertaken in 1981, by way of example.
Could we have up on screen please, Paul,
1213002.
This is one of the documents you've produced
along with your statement, Andy, it shows a range o f
different tests being undertaken in 1981?
ANSWER:
Yes.
|
1,741 | 18 | QUESTION:
Do you know what, if any, information was given t o
your parents about the need for such tests?
ANSWER:
I've never been told by my parents that I've been
tested around those dates for anything other than
haemophilia clotting levels; so they may be -- my m um,
my Dad's passed away, but my Mum may be able to
provide more information but I don't think that she
knew about these tests either.
|
1,742 | 18 | QUESTION:
You have set out at least a belief or a suspicion in
your witness statement that it may be that tests we re
being undertaken for purposes of research.
ANSWER:
Yes. Yeah, I'm -- from what we've since discover ed,
it seemed that there was fairly common knowledge of at
least hepatitis viruses in the blood and so it woul d
be my suspicion that this kind of test was for that
purpose.
|
1,743 | 18 | QUESTION:
Now, you understand from subsequent conversations that
you've had with your parents that your father becam e
aware of a potential risk associated with the use o f
Factor VIII products when reading a New Scientist
article?
ANSWER:
Correct, yes.
|
1,744 | 18 | QUESTION:
That you understand caused your parents some conc ern
and a meeting took place at the Birmingham Children 's
Hospital?
ANSWER:
Yes.
|
1,745 | 18 | QUESTION:
Based upon what your parents have told you about that,
what can you tell us?
ANSWER:
Yes, some concern would be quite an understatemen t.
I have a recollection, a vague recollection, but I' ve
been told since, that there was an incident where m y
father spoke to me around about, it would have been
around about that date, and said "Please, please, t ry
not to hurt yourself because we think there's
something nasty in the blood, in the Factor VIII".
I didn't understand, so I went off and did what I w as
going to do anyway.
But then, as you say, there was a conference,
a meeting called between parents of haemophiliacs a nd
the consultants at the children's hospital in
Birmingham and during this conference, my Mum stood up
and asked Dr Hill outright, "Is there a chance that my
son and all of these people's sons are going to get
HIV AIDS from Factor VIII", and his reply was, "Mad am,
your son has more chance of becoming debilitated wi th
arthritis through not taking Factor VIII than he ha s
of getting AIDS".
|
1,746 | 18 | QUESTION:
That was some time after this article in 1983 fro m the
sound of things because it was that which triggered
your parents' concern?
ANSWER:
Correct, yes.
|
1,747 | 18 | QUESTION:
Now, you now know from your medical records
that blood from 1983, your blood samples from 1983,
showed positive HIV as the result.
ANSWER:
Yes, that is right.
|
1,748 | 18 | QUESTION:
We can see, if we have up on screen please, Paul,
1213003, there's reference there, the document itse lf
is not dated or not legibly dated, but we have
reference there:
"HTLV-3 antibody positive, date of specimen
1983."
Andy, I think this right you have shown me this
morning, we haven't had time to get it on the syste m
but you've provided them to the Inquiry documents y ou
have very recently received from the UKHCDO, the
National Haemophilia Database material at those rec ord
a last negative result April 1980 and a first posit ive
result August -- 16 August 1983?
ANSWER:
Yes, that's correct. I think we discussed we're not
really sure how to interpret those results but at
least it shows that I was infected by August 1983,
yes.
|
1,749 | 18 | QUESTION:
Those documents don't make clear when the test wa s
done.
ANSWER:
No.
|
1,750 | 18 | QUESTION:
And raise the possibility it might have been done on
a stored sample?
ANSWER:
Yes.
|
1,751 | 18 | QUESTION:
But it does show, as you have said, that by
August 1983 you were, in fact, HIV positive?
ANSWER:
Correct, yes.
|
1,752 | 18 | QUESTION:
There came a point when that information, that ne ws,
was broken to your parents. Who told them and roug hly
when from your understanding?
ANSWER:
My understanding is that it was told to them in
a regular clinic appointment at the Children's
Hospital for my haemophilia, and it was told to my Mum
by Dr Frank Hill who came out and quite bluntly, fr om
what I've been told, said, "I'm very sorry but your
son has HIV", quite understandably possibly my pare nts
don't recall much of the rest of that conversation
because they were probably quite shell-shocked.
But from what I understand, there was no
briefing about what it meant for me or my prognosis or
my life from then on, other than the fact that it
wasn't going to be a very long life.
|
1,753 | 18 | QUESTION:
In your witness statement, you put that you thoug ht
that was in 1985, but I understand from talking to
your Mum that she thinks it might have been later.
When does she think that conversation took place?
ANSWER:
She -- her most recent recollection is that it wa s in
around about 1987 when I was ten years old.
|
1,754 | 18 | QUESTION:
You've described understandably that this was new s
that put your parents into a state of shock. Again ,
from subsequent conversations you've had with them,
what was the impact of finding out that information
about their ten year old son on them?
ANSWER:
My parents were really good parents and I think t hey
very much tried to shield me from the turmoil that
must have been going on in their mind, but from wha t
they've told me they were absolutely beside
themselves. They didn't know what to do, they didn 't
know what my prognosis was. All they knew was that
they had to try and give me the best life I possibl y
could before I inevitably died in quite short order ,
really.
|
1,755 | 18 | QUESTION:
As far as you know, were they ever given, for exa mple,
any written material that they could take away and
consider in less stressful circumstances about the
condition or about the prognosis?
ANSWER:
No, I don't recall that they were given anything.0
There was a fair amount of public information
circulating, if you want to call it that, about AID S,
mainly quite graphic and scary commercials with
falling tombstones and, you know, the sparse news t hat
there was about it was that it was fatal, that you
were quite dirty for having such a thing, that your
lifestyle was not the norm, and that really for you r
safety you shouldn't tell anyone about it and they
didn't. They didn't tell anybody.
|
1,756 | 18 | QUESTION:
Now, they told you, not straight away --
ANSWER:
No.
|
1,757 | 18 | QUESTION:
-- but in 1989 when you were about 12 years old y our
Mum told you. What can you tell us about how that
happened?
ANSWER:
Yes, she told me. The reason that she told me wa s
because, and I'm not sure that she would have told me
if it hadn't been for this, but my blood results, m y
CD4 counts or T cell counts as they were back then
T4s, were showing a decline and the hospital told h er
that I would probably need to go on medication very
soon.
So they made the decision, the very difficult
decision, to tell me and it was left to my Mum. My
Dad was at work. So she took me out in the car and we
drove out to a country lane. I'm not sure where it 1
was. It wasn't very far away but it was a nice
peaceful spot. We pulled up into the entrance to
a field. There was a closed gate in front of us
I recall, possibly some sheep milling around, and
I thought to myself what's going on? This is not t he
norm. We don't normally do this. And she turned t o
me and with a very red face, and you could see that
her eyes were welling up as well, she said, "I've g ot
something to tell you", and then she told me. She
said, "The Factor VIII that you've had was infected
with HIV". She said, "Do you know what that means? "
I said, "Well, yes, I know about HIV, a little
anyway", and she said, "Well, do you know what it
does?" And I said, "Well, yes, it eventually kills
you", and she said, "Yes".
I don't know whether it was because I was trying
to help her. I could see she was in obvious distre ss
but I decided to be the strong person and I said to
her, flippantly almost, I said, "I'll just have to
become a researcher or a scientist and I'll have to
cure myself then, so don't worry about it. It will
all be fine", and that was that. We, I guess, hugg ed
and then went home and went about our normal busine ss
as much as we possibly could.
|
1,758 | 18 | QUESTION:
I am going to ask you in a few minutes about the 2
treatment and how things progressed from then on bu t,
just pausing there in 1989 and having been given th at
information, how did that affect family life from t hen
onwards when you had this knowledge? You, I think,
have a sister?
ANSWER:
Yes.
|
1,759 | 18 | QUESTION:
Was it something that was discussed? Did it affe ct
the way in which family life was conducted?
ANSWER:
My sister is a fair bit younger than me. She's a lmost
four years younger than me; so the time I was told she
would only have been about eight, at the most nine.
I honestly do not know when she was told about it b ut
it certainly wasn't then. It was something that we
couldn't discuss, obviously, as a family when she w as
around and, as I recall, we didn't discuss it at al l
really. We almost ignored the fact that it was the re
and tried to get on with living a normal life.
And I think in retrospect that was my parents'
trying to give me a normal childhood as much as the y
could when they knew that everything else would be
stacked up against that, really, and the only time we
really ever talked about it is when I had to go for
clinic appointments and spoke to the doctors.
|
1,760 | 18 | QUESTION:
You have some recollection in relation to your si ster
being told not to share your toothbrush --
3
ANSWER:
Yes.
|
1,761 | 18 | QUESTION:
-- and matters such as that.
ANSWER:
Yes, yeah. I think as the illness progressed and it
started to manifest itself, there were certain --
I think I remember certain sort of skin conditions
and, you know, being a haemophiliac I'd probably ha ve
a few mouth bleeds and what not and I do remember t hat
she or I was told to keep my toothbrush and my towe l
separate. But I'm not sure whether it was down to the
HIV or just down to the sort of hygiene facts reall y,
but I do recall that quite vividly.
|
1,762 | 18 | QUESTION:
In fact, you were also infected with hepatitis C.
ANSWER:
Yes.
|
1,763 | 18 | QUESTION:
But you learnt that a number of years later. Wha t can
you recall about the circumstances in which you
discovered that you had also been infected with
hepatitis C?
ANSWER:
I was at a -- I'd transferred to the Queen Elizab eth
by this appointed I was under the care of Dr Wilde and
I had just seen him in a consultation, and we'd spo ken
about the HIV, we'd spoken about the haemophilia, a nd
the consultation was over, and I went to the treatm ent
room next to have my bloods taken, which was a rout ine
thing, and he popped his head round the door and he
said, "Oh, we must remember to do a genotype for yo ur 4
hepatitis C as well", and that was the first I'd he ard
about it, and I think he assumed that I had known
about it all along but it was the very first I'd he ard
about it.
|
1,764 | 18 | QUESTION:
Do you recall what your reaction was?
ANSWER:
I think I immediately turned to the nurse, becaus e he
popped his head in and just as quickly popped it ou t
again, and said, "What's this about the hepatitis C ?"
I think she seemed to think that I ought to have kn own
as well, so I didn't push it any further. I went h ome
and I asked my parents about it and they didn't hav e
any clue. So I did a bit of research and that was it
really. I just I kind of assimilated it into my
consciousness that way.
But you kind of have to understand that for me
in particular and my circumstances was that the HIV
was the be all and end all. There was nothing else
and whatever hepatitis C was for me at that time
wasn't important because it wouldn't have a chance to
get at me. It would be the HIV that killed me.
So, to be honest, I wasn't, at that point,
I wasn't too worried about it.
|
1,765 | 18 | QUESTION:
Just so that we can establish the dates in relati on to
the hepatitis C --
ANSWER:
Yes. 5
|
1,766 | 18 | QUESTION:
-- you have gathered from your records that the f irst
positive test for hepatitis C that you found is
8 March 1994.
ANSWER:
Yes.
|
1,767 | 18 | QUESTION:
You haven't found any references to any earlier t est
results?
ANSWER:
No, not as yet, no.
|
1,768 | 18 | QUESTION:
Your clear recollection is being told in the way
you've described by Dr Wilde?
ANSWER:
Yes.
|
1,769 | 18 | QUESTION:
You transferred from the care of Dr Hill at the
Children's Hospital to Dr Wilde at the Queen Elizab eth
Hospital some time in late 1996?
ANSWER:
Yes, '96 towards '97, yeah.
|
1,770 | 18 | QUESTION:
Because we have the transfer summary and that is dated
26 November 1996; so that gives us some kind of ide a.
ANSWER:
Yes.
|
1,771 | 18 | QUESTION:
So if those dates and your recollection is correc t
there was a significant gap between the test and yo u
being told?
ANSWER:
Significant, yes. I think I'd been at the Queen
Elizabeth by that point for at least a couple of
years. When I transferred over to the Queen
Elizabeth, I was extremely ill. I mean, extremely
ill. They didn't realise -- they didn't understand6
whether or not I was going to survive at that point
and I recall being relatively stable and well when the
hepatitis C question came up, and so that would pla ce
it about two years after I transferred or around
'98/99, yes.
|
1,772 | 18 | QUESTION:
You have recorded in your witness statement some
surprise shall we say given what was known about
hepatitis C at least from the early 1990s --
ANSWER:
Yes.
|
1,773 | 18 | QUESTION:
-- that it took so long for you to be informed.
ANSWER:
Yes, especially given the transmissibility of
hepatitis C through blood to blood contact and, you
know, HIV was all generally about sexual transmissi on
but hepatitis C seemed to be more easily transferre d.
I think it's something about being non-lipid envelo pe
virus or something like that, it stays alive outsid e
of the body for longer than HIV does, and so it cou ld
linger outside the body and then be passed on to
somebody else.
Well, I had no idea about the fact that I'd got
it and, therefore, I wasn't taking precautions for it
and any person in my family could have become infec ted
because of that, and I thought that that was terrib le.
How could they not have told me that this was a ris k
so that I could guard against it?
7
|
1,774 | 18 | QUESTION:
It's right I should point out that the transfer
summary from Dr Hill to Dr Wilde in November 1996
states that you were told about the hepatitis C res ult
in March 1995 but you don't think that's right.
ANSWER:
I don't recall being told about it at all and my
parents don't recall being told about it either.
|
1,775 | 18 | QUESTION:
You have what you've described as a very vivid me mory
of Dr Wilde telling you in the particular way that
you've described.
ANSWER:
Yeah. I can close my eyes and imagine that room right
now and I can tell you where I was sitting and I ca n
tell, you know, tell you -- I can see his head comi ng
round the door and making that comment, yes.
|
1,776 | 18 | QUESTION:
Now, your Mum having told you about the HIV in 19 89,
you started treatment for that pretty quickly after
that, in about August 1989?
ANSWER:
Yes.
|
1,777 | 18 | QUESTION:
You started on AZT?
ANSWER:
Yes, I did, yes.
|
1,778 | 18 | QUESTION:
What can you tell us about how that was and how i t
made you feel and any side effects?
ANSWER:
I can tell you that it was absolutely horrifying.
I late learned that I was on I think they'd given m e
800 milligrammes a day or something like that. I w as
13 years old. I was a slip of a lad. I didn't wei gh 8
very much at all and they gave me 800 milligrammes, at
least I think, per day of AZT, and it just knocked me
for six. There was fatigue, nausea, headaches.
I just felt like I was really ill on AZT, and this was
a surprise to me because I'd not actually felt that
bad before.
You know, the CD4 counts had been dropping I'd
been told so I needed to go on this medication, so
I go on the medication and all of a sudden I was ru n
over by a truck and I remember going to -- I was st ill
going to school, obviously, at that time and I'd ha d
my pills that morning as you do but I think I'd
forgotten to have something to eat and I could feel
during the trip nausea building and was trying to
contain it and, you know, it was a full coach full of
kids. It would have been horrifying to actually be
sick on the coach. Then we were probably about
halfway there and that's exactly what happened.
I couldn't take it anymore, and I was just sick
everywhere and it was -- it was projectile and it w as
just horrible, and it went all over me, it went all
over the seat in front, all over the person sitting
next to me, and I think that happened two or three
times.
As a child of 13, you can kind of imagine, 9
I guess, what the reaction to that would have been
from, you know, from my school mates. It was a rea lly
difficult time because I couldn't explain what was
going on either.
|
1,779 | 18 | QUESTION:
Because you didn't tell people?
ANSWER:
I couldn't tell people, I couldn't. It was somet hing
that, as a kid, it was something that dirty people
had. That was what we were taught. I know that's not
the case and, you know, everybody can get it but at
that time the stigma was such that if you had HIV o r
AIDS you were a dirty person. It wasn't like
a disease like cancer or something that you could t ell
people about and get sympathy. This was something you
had to keep absolutely secret.
|
1,780 | 18 | QUESTION:
There did come a point whilst you were still at s chool
when you did tell a couple of people. You told a g irl
that you were going out with.
ANSWER:
Yes.
|
1,781 | 18 | QUESTION:
What was the reaction?
ANSWER:
She initially seemed to take it well and then ver y
quickly I got a phone call saying she couldn't do i t
anymore and she decided to break it off, and it was my
first sort of serious relationship, I guess. I fel t
that I had to tell her because we were getting towa rds
sort of 16 years old at that point and there was 0
a hint of the relationship becoming sexual and I fe lt
like I had to tell her because it would have been
immoral of me to have hidden that from her and put her
at risk, so I told her.
As I say, she broke it off and that was me
completely done for relationships for the next ten
years, it was such a body blow that I felt like tha t
was completely off the cards for me, really for --
well, long-term, if not the rest of my life.
|
1,782 | 18 | QUESTION:
There also came a point at which you told your be st
friend at school about your infection.
ANSWER:
Yes.
|
1,783 | 18 | QUESTION:
What happened there?
ANSWER:
He was really supportive. I felt like I'd got so meone
to talk to, which was a huge weight off my shoulder s
and I went on for a couple of years, you know, bein g
able to talk to him and then I started to get very ill
and he supported me throughout all of the illness.
But I think in his mind he prepared himself for me to
die and when I didn't die, I don't think he could c ope
with that fact. He'd made his preparations, he'd s et
it in his mind, and we very quickly lost touch afte r
the combination therapies came out and I survived,
yes.
|
1,784 | 18 | QUESTION:
You'd -- the AZT medication eventually was adjust ed
1
and other therapies added in.
ANSWER:
Yes.
|
1,785 | 18 | QUESTION:
You were able to get through school --
ANSWER:
Yes.
|
1,786 | 18 | QUESTION:
-- and your GCSEs?
ANSWER:
Yes. I managed to get through school up until --
well, I was starting to become ill during my GCSEs but
I managed to get them all done. At that point I th ink
they had lowered the dose of AZT and added in one
called DDI. I don't know if anyone remembers DDI b ut
it came in two forms. You either had to drink -- i t
was a sachet of powder which you dissolved in water
and it was like a sweet salty mixture. You know,
I had to drink that twice a day or three times a da y
or it came in pills roughly the size of -- no, even
bigger I think than extra strong mints which you we re
told to chew and swallow, that tasted a little bit
like the chemical Germolene, so it was not a nice
thing to take. I think that the adherence to that
pill was very low.
But whatever, you know, I managed to make it
through to the age of 16 and got my GCSEs.
|
1,787 | 18 | QUESTION:
But there's no doubt in your mind that you would have
been able to do a lot better at school if you hadn' t
been having to cope with at such a young age with a ll 2
these infections and treatment?
ANSWER:
It is hard to say but I can't see it having helpe d.
Yeah, I really think that had I not had all this go ing
on, both mentally and physically, then I would have
been able to concentrate a lot more on schoolwork.
|
1,788 | 18 | QUESTION:
You were planning to stay on for sixth form. The re's
a detail that someone has told you about some kind of
school assembly.
ANSWER:
Yes.
|
1,789 | 18 | QUESTION:
What was that?
ANSWER:
I was told this after everybody had left school.
I went to a gathering of old school friends and I h ad
no idea about what people knew about my illness. T hey
obviously knew that I hadn't been there for sixth f orm
for most of the time, and so it came as a bit of
a surprise to me when she said, "Oh, we had an
assembly at school" and the headmaster stood up in
front of at least our year, possibly the whole scho ol,
and said that I'd got AIDS and I wasn't expected to
survive.
|
1,790 | 18 | QUESTION:
You started around this point, around the age of 16,
having planned to be able to continue studying and do
your A levels, you became very ill.
ANSWER:
Yes.
|
1,791 | 18 | QUESTION:
You tell us, Andy, how your health was at that ti me. 3
ANSWER:
It began with infections such as, you know, that
manifested themselves as colds or flu or chest
infections that wouldn't go away by themselves, you
know. You expect a chest infection to last probabl y
maximum three weeks but these went on and on and on
and, initially, they examined me for conditions lik e
sinusitis and looked at my chest for pneumonias, bu t
it got to the stage where I was being admitted to
hospital on a pretty much weekly basis, usually by
ambulance because I was running fevers of 41 degree s,
I couldn't keep anything down, I was being sick all
the time, they couldn't give me paracetamol or
ibuprofen or anything like that to keep my temperat ure
down because I would just bring it straight back up .
I couldn't drink water. There was not fluid in me.
I was dehydrated, so they would get me to hospital by
ambulance, and there I would stay for a couple of
weeks on various intravenous antibiotics, some of
which were quite toxic, some of which I had allergi c
reactions to. I remember having full body rashes,
more nausea, terrible pins and needles, itching,
scratching all over, and then during this time ther e
were several, I guess, remedial operations. They w ere
really trying to fight the symptoms at this point.
So I had -- I remember one occasion they did 4
a sinus wash-out because I couldn't breathe through my
nose at all. My nose was just streaming as if I'd got
a really bad cold, so they took me down to the
operating theatre and they did this sinus wash-out
under anaesthetic and when I came to in the -- it w as
one of the side wards, the oncology ward where we w ere
all kept, there was nobody in the room and all I co uld
feel that was that there was some kind of packaging ,
packing, around my nose. So I groggily went to the
bathroom, still half asleep from the anaesthetic an d
took this off and started tugging at what was up my
nose and it was long pieces of gauze and I got it a ll
out, and then the blood came and it was everywhere and
nobody was there and I was pushing my buzzer and it
was in a side room, I was on my own, nobody was com ing
to see what was going on.
So, eventually, to get someone's attention,
because I thought I'm going to bleed to death, I ha d
to pull the cardiac arrest button and then they cam e
kind of rushing down telling me I shouldn't have
pushed the cardiac arrest button, but eventually go t
me kind of stable, you know. The nose bleeds were
stopped and I was okay but -- and then they had to do
sinus wash-outs again a couple of times in the futu re
but at least I knew what to expect and didn't pull the
5
stuff out of my nose. But that was one such occasi on.
Then there was -- I think I had to have grommets
put in my ears as well because the eustachian chann els
were blocked and this was all through -- I think th ey
detected a virus or a bacterium called pseudomonas was
just something I couldn't get rid of because I'd go t
no immune system whatsoever.
I developed nasty chest infections and
pneumonias for which they gave me high dose steroid
treatment so, I mean, I remember a tub full of tiny
red pills, prednisalone it was, and I had to swallo w
these a couple of times a day.
The side effect of those initially was to make
my cheeks puff out like a hamster, which everybody
found very amusing. It helped a little bit with
appetite as well, which I was struggling with, but
then later on I found out that they had caused
a condition called avascular necrosis of the femora l
heads, which means the blood supply to my hip bones
was killed off and the hip bones themselves started to
crumble away, so I was left unable to walk really, not
walk very easily anyway. The hip bones had become
deformed. They were all jagged, and it was very
painful to put weight on. Eventually, later on, af ter
several treatments that didn't work, they tried to 6
drill out a core of bone to try to stimulate the bl ood
supply. That didn't work.
They tried to use magnetic therapy which meant
a machine by the bed every night connected to a lar ge
magnetic shield, if you like, which was about that big
(indicated) , a dinner plate-sized thing which I would
have to put down a specially designed pair of short s,
one side per night, for many months, trying to get the
magnetic field to stimulate bone and blood growth.
That didn't work.
Then eventually they were -- I mean, they were
very reluctant to perform hip replacement surgery o n
me because I was still very young but eventually
I persuaded them to do that and I have had two hip
replacements now, one in 2001 and one in 2007.
Yes, so I mean a couple of the other things that
happened during those four years, I was diagnosed w ith
candidiasis, which is like a thrush-type thing but
goes -- it's on the back of your throat and it goes
down your oesophagus, which makes it very difficult to
eat, and then also -- that was an AIDS-defining
illness I found out later, and then there was also the
weight loss and the fact that I couldn't eat at all .
Whatever I ate I would bring up, and in order to
survive that, I was put in touch with a nutritional 7
care nurse who said that the solution really was to be
fed overnight via drip feed via nasogastric tube. So
that was my life for a good couple of years having
that nasogastric tube in, and one day I was complet ely
fed up with it and I think I'd been sick and when y ou
are sick with a nasogastric tube, the bit that's in
your stomach comes out of your mouth and it's horri ble
trying to -- sorry to be so graphic, but it's horri ble
trying to remove that it goes back through your mou th
over your tongue and then you've got to pull it out
and it's really not a nice thing to have and I'd
gotten fed up with it and I said, "I don't want thi s
thing anymore". There was a little bit of
a conference with the nurses and my Mum and they sa id,
"Well, you know, we'll support you in whatever you
want to do but you do realise if you don't have thi s
tube, you probably won't last much longer".
So I digested that for a little bit and then the
following morning they came back in, my Mum tells i t,
and the tube was in. I'd put it in. I wanted to
survive, I guess.
|
1,792 | 18 | QUESTION:
The years that we're talking about are really in the
course of the '90s from the age of about 16 onwards ,
your late teens and early adulthood?
ANSWER:
Yes.8
|
1,793 | 18 | QUESTION:
You had what was often then referred to as full-b lown
AIDS?
ANSWER:
Correct, yes.
|
1,794 | 18 | QUESTION:
We get a snapshot of hospital admissions from the
transfer summary that you've produced as part of yo ur
evidence which shows that, for example, just betwee n
July 1994 and the date of the transfer summary in l ate
'96 you had been admitted to hospital 24 times.
ANSWER:
Yes.
|
1,795 | 18 | QUESTION:
Those weren't one-off short admissions, those wer e
admissions in which you would stay in hospital, oft en
for prolonged periods of time.
ANSWER:
At least a week, probably two or three, yes.
|
1,796 | 18 | QUESTION:
You've described a range of the -- in your statem ent,
a range of the drugs that you were given. One was
a drug that was a leprosy drug?
ANSWER:
Yes. I became allergic to -- they used to give y ou
prophylaxis for a condition called PCP pneumonia,
which was an AIDS defining illness, and they used t o
give you a drug called Septrin, and that was suppos ed
to guard against getting PCP but, in my case, after
I'd been taking it for a couple of years, it sudden ly
decided to react on me and I had a full body rash a nd
they immediately took me off it because apparently
once you manifest this symptom it can get dangerous
9
quite quickly.
So they had to do something else. They had to
give me some other kind of prophylaxis against PCP and
the first one that they tried was called dapsone.
I think that was the anti-leprotic drug, so it was an
anti-leprosy drug but I forget now why they took me
off it. I think I was having a reaction to that as
well. I couldn't tolerate it.
The next one they tried was Thalidomide. Again,
I don't think -- maybe that one didn't work properl y.
From what I'd heard about it, it was supposed to be an
anti-emetic and, of course, we know about the foeta l
development issues with it, but it was still quite
a good anti-emetic and, apparently, it was supposed to
guard against PCP as well but for whatever reason i t
didn't with me.
So the third and final attempt at guarding
against PCP was a drug called pentamadine.
Pentamadine was taken by nebuliser , which means tha t
you put the liquid into a device. It turns it into
a gas and you breathe it in, so the procedure was t hat
I would take salbutamol first which would open up t he
pores in the lungs, I would have that for half-an-h our
by nebuliser and then I would take pentamadine for the
next maybe half-an-hour to an hour, something like 0
that. But the problem with pentamadine is that it' s
extremely toxic. I had to be put into a separate r oom
within the hospital. The nebuliser had to be
exhausted out of a window because the drug was so
toxic. Bearing in mind that I'm breathing this
directly in and then the room had to be kept vacate d
for about four or five hours after I'd finished the
treatment as well.
It wasn't a nice experience. It was -- it made
my nose bleed. It made me shake. It made me cough ,
but at least it was only once a month and so I mana ged
that for several months, yeah.
|
1,797 | 18 | QUESTION:
One of the things that bothered you most during a ll
this time was when, because of your mobility proble ms,
you had to use a wheelchair for quite a prolonged
period of time.
ANSWER:
Yes. I tried to make my way around on my feet as much
as I could but because of the hip problems, it was
very difficult to go long distances and so -- I mea n,
I'd been used to being in a wheelchair for the
haemophilia, but it was only for a period of two or
three days at a time when I went to school, but at
this point it was almost a necessity that I would h ave
to be in it for any kind of long journey. Despite
everything, despite the haemophilia, I've always ha d 1
my mobility and so that was a bit of a body blow to
have that taken away as well.
|
1,798 | 18 | QUESTION:
Can I ask you about something you say in your
statement, talking about the wheelchair. You said
this:
"It was one of the things that the bothered me
most because although I knew I wouldn't survive my
illness, the wheelchair took away my mobility and a ny
independence."
I wanted to ask you about a phrase, "I knew
I wouldn't survive my illness".
ANSWER:
Yes.
|
1,799 | 18 | QUESTION:
You believed then, based on everything that was
happening to you, that you were going to die?
ANSWER:
Yeah. If I hadn't made the conscious thought tha t
that was the case, then somehow subconsciously I kn ew
it. I was under no illusion how ill I was. It did n't
stop me from having a fighting spirit and wanting t o
get better but that was the reality that was facing
me, yes.
|
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